Madness

There’s an educational video from that time, called “Understanding Asperger’s,” in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality.

“Understanding Asperger’s” was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.

No act of fraud? To say that it was an honest application of the rules of psychology is no defense from that charge. You would better say that your mother was as taken by the fraud as everyone else. Say that she was even more a victim than were you, for she gave her life to it.

14 comments:

Ah, and we should 'believe' in science, should we? Science isn't truth, it's just another tool we use in seeking it. Like any tool, we aren't always proficient in it's use. Once people start realizing this, we can begin to get out of 'science' driven hysterias like banning DDT, or heterosexual AIDS (outside Africa), and Global Warming. At least I hope so.

I've gotten into arguments with acquaintances over this very issue. When the definition of a disorder is so overly broad as to include people who really are just socially awkward as having autism, of COURSE the number of cases will be astronomically higher than it was previously (when the definition was more strict). A couple I know were (and may still be) anti-inoculation crusaders. And their core evidence for the link between inoculations and autism was "look how many more children have autism now than there were in the past!" They pointed to information such as the radio ads that claimed that one out of every 100 children now have autism.

I tried to point out that the definition of what constituted autism (what is now called the "autism spectrum") was VERY specific within my living memory (and I'm not all that old). I recall autism as the 'child trapped within their own mind'. Unable to communicate with anyone. Now, as that article points out, it includes 'child who is socially awkward'. Hell, by that standard, I was on the spectrum, I am sure.

And when I first heard they were talking about tightening up the definition, I KNEW there would be howls of outrage. "You just want to deny children the services they NEED!" No, I want the world to stop acting as if everything is some form of "disorder" when in fact the child is "different". ADD, ADHS, Aspergers, Autism... they're all nebulous "disorders" that "need to be medicated", when in the past, we'd say the child was "flighty", "dreamy", "socially awkward", or "odd" and simply move on. And in the vast majority of cases, those kids moved on to be perfectly fine adults. I'm not one to call this a "conspiracy by the pharmaceutical industry" (I think that gives them far too much credit), but I DO think we tend to over medicate children because they don't fit our ideas and ideals of how "good children should act."

I'm pretty open to the idea of a spectrum of mental profile that runs from autism to what you might call mild Asperger's. I guess where I part company with a lot of the psych field is in my willingness to characterize most of that spectrum as a "disorder." I'm pretty Aspergerish, as have been most of the people I've cared strongly about in my life. It's just the way we are; it has its good and bad points. We can support ourselves and lead full lives, so what's the big deal?

The social safety net is a dangerous tool in the wrong hands. You funnel enough money in that direction, and you get a strong motive to shift the definitions in order to bring a bigger market within the definition. And there are some people who can't resist tinkering with everyone until they're all the same, a standard healthy model.

It's a shame, too, considering how inadequate are our resources for dealing with real horrorshows like bipolar disease and schizophrenia, in terms of both effective medication (not) and acceptable living arrangements (not).

The problems come when the person cannot support himself. It can take years of work--quite a few more than the usual years to raise a child--to devise the workarounds and protocols to guide him in recognizing/avoiding problems.

Been there, doing that.

Now if you ask how much professional help matters, I can't actually tell. Help and patience matter, but I'm not sure how much of it needs to be degreed.

A family member of mine is a pediatrician. He states that autism, as a clinical diagnosis, is first and foremost profound mental retardation. Everything else stems from that observation and definition - no severe retardation means no autism. Thus, as a medical diagnosis, there is no such thing as "autism spectrum disorder." There are varying types and degrees of retardation, childhood schizophrenia, syndromes (Downs, Williams, Turners et al), and problems like mercury poisoning. Are some people/ children clinically hyperactive, mildly anti-social or depressed, or what have you? Absolutely. But that is not "autism" as a pediatrician would diagnose it. Why are so many more people diagnosed as "autistic" or having "autism spectrum disorder?" Perhaps because no one wants to hear that their child is retarded or has schizophrenia even if it is true. So believes one pediatrician. YMMV.

I find it plausible that we will find out that autism and Asperger's result from the same sort of cause, and it's just that one is very mild while the other is severe and disabling. For now it's just speculation, since we don't understand the physiological mechanism for either.

I'd guess there are several origins for autism, and several varieties. I've been up close to a number of autistic children and young adults (the local autism social group), and there are similarities in what you might call "mental morphology" to each other and to Asperger's, but I can't say much more. I haven't been around the severely autistic; these could all either dress themselves or stay dressed.

I'm reminded of the scene in "The Cowboys" where Wil Anderson gets the stuttering boy to stop stuttering by confronting him and forcing him to focus (because his inability to communicate while nervous could be life threatening). What would today's mental health professionals say about that? If the desire is to have people be functional in society, that seems like it might be a reasonable treatment in some cases. I think there might be better ways, especially where time is available, but whatever works, right? The problem, I think, is that too many mental health professionals think their job is to lead people to happiness. Only the individual themselves can do that.

Douglas, it's a movie. The writer can make the characters do what he wants.

I make my living in a corner of this, at an acute psychiatric hospital. The psychiatrists tend to be harder-edged science types, the psychologists, a bit less, and the social workers less still. From my limited observation the people in education, who we sometimes interact with about a young person, are the least scientific, and most willing to use expansive definitions and design programs on that basis.

We throw the word "asperger-y" around a lot behind closed doors, but it seldom shows up in any formal evaluations and even less in the diagnosis column. That is because it is a useful shorthand for a type of patient who doesn't pick up social cues, gets easily unnerved by small things not going correctly, but has good ability to focus on favored activities and may even be above-average in intelligence (especially math/spatial). It is rather like a coach saying that a player "knows where his teammates are," or a music critic saying "she doesn't have a lot of presence." It can tell you something, so long as you don't push it too far. We also laugh at ourselves about the overuse, often noting - "hey, that's what I did as a 20 y/o! Is that a problem? I call it a strength."

But the educational evals use these convenient shorthands as gospel truths. Worrisome.

The idea that autism requires a retardation diagnosis I would reject. I see the point, as there should be considerable incapacity, not mere hampered functioning, but that is not a required part of the picture.

The other part to be careful about is falling into a mindset of "the good old days" in education. The good old days sucked, and we ruined a lot of kids we didn't have to. The blog-commenting audience reminiscing about education drastically over-represents the top 20% of those classes in the 40's-70's. One simply cannot drawn any reasonable conclusions from the rose-tinted memories of the favored group.

The educators in the Good Ol' Days weren't preternaturally "good," but they did manage to instill life-lessons early. F'r instance, receiving a whack over the knuckles with a steel ruler for pen-and-inking the outlines and borders of the countries in South America, labeling them, adding the names and locations of their capitol cities from memory, the boundaries of the Andes, the location and watersheds of the major rivers, and then sitting back to admire my handiwork taught me One Great Thing:

Just because you have fulfilled the basic requirements of an assignment to your own satisfaction does *not* necessarily mean that you have completed the task to someone else's.

Especially if you still have some white space on the paper and ink in the inkwell...

Douglas, it's a movie. The writer can make the characters do what he wants.

I thought I said that. My point was that too many people- some so-called professionals (I think typically are the social worker and education people) think every kid with a stutter is a psychological problem, or every kid with some issues in social situations is in the Asperger's spectrum. Sometimes they just need to grow up, and we shouldn't be afraid to consider that. I'll add that I speak to this as someone who could easily have been considered in the Asperger's spectrum as a youth, but I think is relatively normal as an adult- I just needed to get over myself and grow up. I guess you could say, I wanted that kick in the ass sooner.

Douglas, sorry if I seemed dismissive. It's a pet peeve of mine. In Phillip Yancy's What's So Amazing About Grace? I never got past my irritation that he had used Jean Valjean as evidence that grace "worked" to change character. Fiction illustrates, but is not evidence.

Your alusion is improved by relating it to your own sense of what you may have needed as a lad. But I would be cautious even there. I find that almost none of our memories about what affected or changed us in our backgrounds are strictly true. We think they are the most likely to be accurate because we have re-remembered them and considered them deeply, but these are the precise reasons that they are the most unreliable of our memories. When we have hard data from the past - letters, videos, reports, newspaper articles - we always find it is not as we remembered.